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    Agenda for Washington April 12

    We just thought it was complicated last week. Now things get hairy.

    Talking points:

    1. Who is invited? I want to be loud and clear here. AB's, wheelers, the neighbor who is tired of mowing your lawn for you, your kids, your parents. Chinese and Canadians too. [img]/forum/images/smilies/biggrin.gif[/img] I'm not the boss but I feel strongly on this. It is too hard for a lot of the wheelers to participate, unfortunately. I'm grateful for every AB that cares to represent one of us.

    2. WHO thinks they can make it? We need this info to know which legislators to schedule appointments with.

    3. We need to distill our mission. The GMHC says this: "Focus on the key issues. Don't arrive with a grocery list. When you have discussed the issues you want to discuss, give someone else the chance to speak." So when we split up and meet with our legislators, we all bear the same message.

    4. Do we plan to meet with people already on our side or take on those opposed? (Aside from our regional reps.) Assuming for the moment that our goal is simply passage of the CRPA, the CRPF website has a list of legislators in favor and those not in favor or opposed. After we meet with our local people, do we reconvene and all meet up with a few key guys?

    5. My only problem with t-shirts is that it is recommended to dress up somewhat when meeting with legislators. I find it true in the world in general, when I look better people treat me better.

    6. Do we need a committee? We all have email, im capability, we should be able to run this as if we all lived next door to one another.

    7. It would be good if one person for each state represented would "take charge" for that state...making and confirming appointments, writing and sending thank-you notes. See below...

    "Before the meeting: Schedule and confirm all legislative appointments ahead of time: send a letter requesting an appointment, include the names of who will attend, and the issues you want to discuss. Then follow up with a phone call to the office scheduler."

    "After: Immediately after the meeting, make notes on what was discussed and what your legislator agreed to do.Follow up the meeting with a thank-you letter that summarizes your understanding of what your legislator has agreed to do. Remind him or her that you are available as a resource. Always send separate letters to any staff member(s) you met, and make it a point to keep in contact with them."

    8. Route for March? (Thanks, Suzanne.) One that I found by googling is "...protesters gathered on Constitution Avenue near the Washington Monument. Protesters marched down Constitution Avenue, circled the White House, walked through downtown Washington and returned to where they began."

    9. Time? March in the morning, lobby in the afternoon?

    10. Where to all meet up? Any D.C. locals, please pitch in here.

    Note to everybody: Please note that Suzanne Poon and her husband have most kindly offered to pick up the hotel bill for 10 sci's. If money is an issue (and when is it not?) you'll never get a better opportunity to make a difference. Props to Suzanne, you go, girl.

    More?

    "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo

    [This message was edited by Betheny on 01-22-05 at 04:41 PM.]

    [This message was edited by Betheny on 01-22-05 at 04:43 PM.]

    [This message was edited by Betheny on 01-25-05 at 03:55 PM.]
    Blog:
    Does This Wheelchair Make My Ass Look Fat?

    #2
    Originally posted by Betheny:

    4. Do we plan to meet with people already on our side or take on those opposed? (Aside from our regional reps.) Assuming for the moment that our goal is simply passage of the CRPA, the CRPF website has a list of legislators in favor and those not in favor or opposed. After we meet with our local people, do we reconvene and all meet up with a few key guys?
    WOW your talking points are very comprehensive Betheny! Thanks [img]/forum/images/smilies/smile.gif[/img]

    I think it is important to speak with people on both sides. When a face is put to an issue it makes people like Wyden and Lautenberg fight even harder for us.( Hope2FindaCure and I really felt that because her husband and Jason were in the audience July 14, 2004 at the Senate committee hearing, and it was clear we wanted no avenue of research closed, that it encouraged both Wyden and Lautenberg to speak up as strongly as they did.)
    And others who oppose more money for SCI research may change their minds when they meet with us face to face.

    ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~

    [This message was edited by Faye on 01-22-05 at 03:54 PM.]

    Comment


      #3
      Originally posted by Betheny:


      3. We need to distill our mission. The GMHC says this: "Focus on the key issues. Don't arrive with a grocery list. When you have discussed the issues you want to discuss, give someone else the chance to speak." So when we split up and meet with our legislators, we all bear the same message.
      CAMR and JDRF develop Leave-behind packets that summarize the main points discussed and gives the legislator contact info. to work with.

      ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~

      Comment


        #4
        What a golden opportunity for me to serve and participate in this special project!!! In the past, I can only do as much as I can in Hong Kong. Wow, I can't believe that I am now pushing for a cure for my son and everyone in the world in the Greater America...

        Beth, I have never communicated much with you before. Now that I found I like your style, your tone and, most of all, your efficiency!

        Some agenda here for the March:-

        1. Which hotel? Washington Plaza Hotel? Let's decide ASAP in order to secure reservations.

        2. What time of the day? Morning, noon, afternoon?

        3. Where is the route? Starting point: Washing Plaze Hotel??? Ending Point for gathering???

        4. Do we need to contact the Police Department and/or other related departments?

        5. Any rundown of the March?

        6. Any dress code? Cure T-shirts, bracelets etc.

        That's all for the time being! Many thanks!

        Suzanne
        Suzanne

        Comment


          #5
          Betheny

          Although I can't participate, You Lady are heading the charge!!!!!!

          there need's to be alot more people like you!!!

          Your Great

          Doug

          Comment


            #6
            Originally posted by Betheny:

            6. Do we need a committee? We all have email, im capability, we should be able to run this as if we all lived next door to one another.
            if you all would find it useful, I'll set up an email list on one of my web accounts... i.e. I can create a new email address that would automatically forward all messages sent to it to everyone on the list, which would keep things simple.

            Comment


              #7
              This is what the Doctor ordered. I wonder how many depressions this movement will alleviate. Just by taking our power and doing something about this situation is so uplifting. Beth some of your ideas are striking, and of course Faye not only do you have conviction, but the knowledge, judgment and experience to reach our goal; to get serious about a cure for SCI. And not to forget about Suzanne Poon's efforts that have spanned the continents. I hope the rest of you guys realize we got the RIGHT STUFF here

              Comment


                #8
                Scott-
                I think that would be really helpful, having an email list that covered everybody, especially as the time draws closer.

                "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo
                Blog:
                Does This Wheelchair Make My Ass Look Fat?

                Comment


                  #9
                  Suzanne is right, the sooner the better as far as hotel decisions go. Some points on this subject...
                  1. Please don't reserve a handicapped room unless you really need one. In my case, it's a little easier but I can do without. I know some ab's like handicapped rooms for some reason, but I know nobody involved in this would stoop so low LOL.
                  2. The hotel needs to have a bar. This sounds frivolous but we wandered all over nyc looking for a place to socialize and I hear D.C. isn't a city you want to traverse in the wee hours.
                  Blog:
                  Does This Wheelchair Make My Ass Look Fat?

                  Comment


                    #10
                    2. The hotel needs to have a bar. This sounds frivolous but we wandered all over nyc looking for a place to socialize and I hear D.C. isn't a city you want to traverse in the wee hours.
                    Maybe we can get some more suggestions on hotels from Clipper cause I'm really not familiar at all with Washington.

                    The Washington Plaza Hotel from which we walked everywhere, however does have a bar:

                    Happy Hour Promotion:
                    Happy hour at the International Lounge 7 days a week between 4:00pm and 8:00pm.

                    Drink Specials:

                    Corona ($3)
                    Draught, Domestic Beer ($4)
                    Martini's ($6)

                    [img]/forum/images/smilies/biggrin.gif[/img]

                    http://www.washingtonplazahotel.com/calendar.html

                    The Washington Plaza offers a unique blend of cosmopolitan ambiance and unpretentious hospitality in an uncommonly spacious setting, right in the heart of Washington, DC
                    ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~

                    Comment


                      #11
                      Hi Beth,

                      I can't be there in person April 5th, but, I'm on board to help with the State of Minnesota planning efforts. I'm sure SydneyJo, Theophania, and Jessecj7, to name a few, would be glad to be part of a MN sub-group, as well. <I'm hoping to get Peter Morton involved, too>

                      My only request to all: Keep the partisanship off the table. This way, all will feel much more united to participate. The liberal and conservative views are too polarized and will divide us.

                      My vote for primary objective:

                      Full passage of the CRPA, with funding. Take those promising therapies collecting dust on researchers shelves and fast track them into clinical trials here in the USA. Emphasize the billions this country would save by solving this issue. Of course, also include facts on the human suffering aspect, as well.

                      Thanks,
                      Sue
                      Please submit your photo and story of hope:

                      http://bridges2hope.unite2fightparalysis.org/


                      http://unite2fightparalysis.org/

                      Comment


                        #12
                        Personally I think you'll be hard-pressed to find rooms for $79/night in the city, but I could be mistaken. Parking alone is $20+/day. Think about utilizing AAA discounts, group rates, etc etc.

                        Regarding an email list, just let me know & it's done.

                        Comment


                          #13
                          Okay, info on permits, regs etc.
                          From:
                          Exercising Your Rights Of Political Protest In Washington, DC
                          Prepared by the Washington, DC Chapter of the National Lawyers Guild

                          Link to Excercising your rights site

                          Each year hundreds of special events are held in the District of Columbia. Residents and organizations planning a special event are required to obtain permits to hold special events in DC. The following forms provided here to simplify the application process. After completing a form, please mail it to the address included on the document.

                          Link to Obtaining Permits Wahington D.C.

                          "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

                          Comment


                            #14
                            We could have been just lucky getting the Washington Plaza for $79. I guess the only way to get a low rate like that would be to go to "Last Minute Hotel Deals" at www.hotels.com :

                            http://www.hotels.com/promotion.jsp?id=1043

                            Where right now they have three other good ones listed in the low price range ( around $80)

                            Bethany thanks for the info on the permit. Seems pretty straight forward. Do you want to fill that out? Or if you feel more comfortable you can list my name and address too.

                            ~ Scrutiny of an election with many unanswered questions does not damage public confidence in the democracy; absence of scrutiny does. ~

                            Comment


                              #15
                              Here is what I recommend:

                              1) Develop key messages. These are the objectives and purpose of the march. They should be short and to the point. No more than five. These "themes" wil be carried out in everything we say and do. Think of it as a teased-out mission statement.

                              2) Development and distribution of two press releases: one prior to the march and one immediately following. The first should give the basics: who, what, when, where and why. Background on SCI, too, like numbers and cure efforts. The second will say what we said and did and repeat the SCI stuff. Press releases should be distributed to key local and national media and wire services. No more than two pages in length, better if held to one.

                              3) Development of media kit. This kit contains brief written materials to serve as supplementary backgrounders. Include SCI fact sheet and bios on march participants. Kit distributed with first press release.

                              4) Interview. Work to secure at least one interview with key news organization. Interview would be with group spokesperson, preferably someone with SCI or a parent/child combo.

                              5) Tailored press releases. Resources permitting, customize aforementioned press release to each march participant and send to media in each person's hometown. Include short bio. "Joe Smith of Anytown to march on Washington" is an appealing local story.

                              I won't be able to utilize the resoures of my firm to help, or put my name on anything distributed to the media. But I can write some stuff for you guys and make everything professional.

                              Comment

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